Hashimotos?

[DebTex]

I’ve been on T4 more that half my life, the Dr’s that I have come across here in the USA aren’t any better at treating hypothyroidism than it sounds like the Dr’s in UK are. I have a question on my latest lab that I picked up today, I asked the Dr. to check my freeT3, TPO and TG, bit D, folate, ferritin, and B12, like I’ve been reading on here that needs to be checked, surprisingly he checked the TPO and TG but nothing else that I asked him to and if he had checked my free T3 like I asked him to before I started taking cytomel we could have seen if I was converting it, but he won’t even check it at all, grrr, here’s my results

T4 Free was -0.83 ng/dL — Limits 0.82–1.77

TSH was-1.700 ulU/mL — Limits - 0.450 — 4.500

T3 was 84 ng/dL - Limits 71—180

TPO was 211 IU/mL —Limits-0.34

TG thyroid antibodies was 15.6 IU/mL

Limits-0.0 —0.9 both TPO and TG were flagged as high, does that mean I have Hashimotos, the P.A. that I talked to about picking up a copy of the results was no help at all. I had been taking 88 mcg Synthroid for the last couple of years, doing poorly on it, had taken 100mcg of it before, that wasn’t the answer either begged GP to try cytomel so this test was on 56mcg Synthroid and 7.5 cytomel, still don’t feel well so he increased the cytomel to 5mcg in the morning and 5mcg in the afternoon, I haven’t increased it yet, a little leary, I feel nervous occasionally on what I’m taking now, and have been having stomach/bowel issues on it that I didn’t have before but the GP doesn’t listen, sound familiar? The labs were done on my taking 56mcg Synthroid and 7.5 cytomel for 2 months. I will be asking him why he didn’t check the other things that I asked him to the next time that I see him, the patients aren’t supposed to have any input or a brain in their head I guess 😡

[silverfox7]

Are there any private labs you can get to test your vitamins and minerals as they can make a huge difference? When I was first diagnosed I got a lot of advice from Mary Shomom or Shomon, sorry can't remember how to spell it but she has loads of advice. She isn't a doctor but works with a doctor and gives much good advice back up by this Your doctor may be prepared to listen more to someone more local.

[DebTex in reply to silverfox7]

There is a private lab I can go to, I would like to get my vitamin and minerals tested, I have read some of Mary Shoman’s thyroid work, she seems pretty knowledgeable, thanks, I don’t think my Dr. is very up on the thyroid, so I’m like everyone else looking for one that is, almost all the females in my family are hypothyroid, my sisters and their daughters, weird, one of my sisters goes to a endocrinologist and she is like my GP, she isn’t open to opinions, suggestions or anything that you’ve heard or read. It’s very frustrating. Thanks for your help.

[silverfox7 in reply to DebTex]

You're welcome!

[Hidden]

Yes, that means you have Hashimoto's, but that usually won't affect treatment.

Both your free Ts are very low, so you don't seem to be converting t4 to t3 very well.

As others have pointed out, the TSH is basically irrelevant once on a combination of T3 and T4 (either synthetic combo or NDT).

The problem is the most doctors will focus solely on normalizing your TSH, and once it's anywhere in range they conclude you are optimally treated and don't care about your free t3 and free t4. In the almost 20 years since I was diagnosed with Hashimoto's myself, I have come across many doctors who did not even know what free t3 was.

To feel well and rid myself of all hypo symptoms, I have had to self-diagnose and self-treat. This means disregarding my TSH (<0.01 for years) and focusing mainly on my ft3 levels. Doctors tend to freak out about my suppressed TSH but I have learned to ignore that.

Unfortunately, it's very likely you won't make a complete recovery if you listen to your doctor as most doctors will treat your TSH and not your actual thyroid hormone levels.

[DebTex in reply to Hidden]

Thanks for your reply, the thyroid is such an important part of our bodies, why don’t they make all physicians do enough training about it so that they know what’s going on? You said you’ve come across Dr’’s that didn’t know what Free T3 is, mine said he would check it on 2 different blood tests because I was concerned that I wasn’t converting and he didn’t do it, it makes you wonder? The last GP I had knew very little about the thyroid and the one I have now isn’t much better, so they just leave their patients suffering.

[DebTex in reply to Hidden]

Do you like cats btw?😻

[Hidden in reply to DebTex]

Yes

[Hidden]

PS. I find this article excellent when it comes to determining optimal levels:

restartmed.com/normal-thyro...

[DebTex in reply to Hidden]

Thank you, I will check it out!

[dtate2016]

I am likewise here in the US . I go to a doctor a functional doctor near Tulsa Oklahoma. I live in Missouri. I travel 500 miles one way to see this doctor because they’re the only ones I know the functional doctors that listen and know how to treat Hashimoto’s. You most likely do have Hashimoto’s.

The functional doctor tells me that many people with Hashimoto’s have a conversion problem they cannot convert T4 to T3 - which must take place for proper supplementation and metabolizing of the thyroid hormone. I have had 30 years dealing with this problem. The best thing that was recommended by the functional doctor is natural desiccated thyroid hormone or NDT. It’s desiccated pig thyroid glands. Natural not synthetic and for me it worked wonders almost immediately. I don’t have to worry about the conversion problem like I did with Synthroid. Many doctors do not want to recommend NDT and say it doesn’t work. Some of the brand names are armor thyroid and Nature Throid. The pig thyroid contains both T3 and T4 in similar ratios to human . Highly recommend the NDT route .

I also take vitamin D and have for years 2000 to 5000 IU per day. I took them for years without a test and knew for sure that I felt better. Finally they tested me and I tested low even taking 2000 a day. My insurance company would not pay for the vitamin D test because it wasn’t standard medical treatment or approved medical treatment for Hashimoto’s. Also take selenium 200 mg for a day. I find that it helps me and helps the NDT I was able to reduce dosage by 1/3 taking selenium. Digestive enzymes and proteolytic enzyme‘s can also help with the conversion of T4 to T3. Again many people with Hashimoto’s have digestive problems you could be tested for it and I was - had to pay cash for it because again insurance would not pay - not standard protocol for the treatment of Hashimoto’s. The test prove that I did in fact need these enzymes.

Here in the US the doctors and the patients are squeezed by the insurance companies . My experience is, many times when the doctors won’t do what we ask, it is because they know they won’t be paid by the insurance companies and then the patient will scream. Likewise if they recommend too many treatments that are not mainstream medical protocol then they’ll be labeled as a quack by the insurance companies and perhaps even kicked off as a preferred provider in insurance group. That functional doctor that has help me so much over the years? he was banned by Blue Cross and Blue Shield. The only way I can get things paid for is to submit the bills myself to the insurance company.

We can navigate this broken medical system with the help of places like health unlocked. But we do have to educate ourselves and in my opinion do the trial and error thing. There are a lot of folks on here that insist on the blood tests before embarking on any treatment - and I’m not saying it’s a bad thing it’s just that for me, I can’t wait, I can’t fight all those fights I just try it if I feel better I do it. I’ve learned to listen to my body and I feel pretty good I actually do very well. I do try to work with the doctors and I do ask for the tests but again I don’t wait. Took 10 years to find a doctor that would prescribe NDT. Of Course I had to wait on that I had to take some sort of thyroid supplement anything I could get for a while.

A lot of things have changed and NDT is more accepted now even though looked down upon by many Drs. Hang in there! Find a functional doctor they listen. Please keep in touch and let us know how you’re doing on your journey.

[DebTex in reply to dtate2016]

Thanks so much for your insightful reply. I never thought about all the possible reasons my Dr. wouldn’t do the test and things that I asked of him, I just thought he thought he was the great all knowing being. This lab work was done on 56 mcg T4 and 7.5 T3, he recently increased the T3 to 5 mcg twice a day, I haven’t increased it that tiny bit yet because I have some nervousness and heart taking off beating fast for a few seconds sometimes so I’m not sure if this cytomel is going to be for me, I’ve only taken it for a couple of months, I might have to try and talk my Dr. into me trying the NDT, I’m not sure if there are people out there that can’t handle much T3, but I don’t know what you’re supposed to do if you are one. I will keep trying until I get something that works right for me, I will get on the suggested vitamins by everyone on here too. Thank you so much, this is a very helpful. forum.

[Hidden in reply to dtate2016]

Things seem just as bad in Europe. In many countries it seems impossible to get a prescription for NDT. Thank God for Thai NDT!!!

[Hidden in reply to dtate2016]

There is one thing I've been wondering when it comes to impaired conversion in Hashi patients: what your doctor says makes a lot of sense. But is there a reason why Hashi patients should take NDT which is 80% T4 which we cannot convert in sufficient amounts...the reason I'm wondering is because US doctor Westin Childs advocates the lowering of NDT doses and the addition of synthetic T3 in many hypo patients.

[dtate2016 in reply to Hidden]

The doctor said we lack the enzymes to convert. Other than that I can only guess as to why desiccated Porcine glands work.

Our bodies seem to know what to do with natural things. There is example after example of synthesized medicine not being as good as the natural or not being metabolize as well. Bio identical hormone’s come to mind as when women in menopause are treated with the same. We know nature throid, in particular is more than just T3 and T4. Fish oil for another. All other manner of herbal remedies that different ones have tried to identify and isolate what they believe is the “active ingredient“. Most of them fail to do as well as the herbs. for all things work together in the natural medicine world.

Other things also come into play as in genetics and different make up of each one of us. That same doctor had me tested genetically and it did reveal that I have two copies of an altered / morphed MFTHR gene. What I understand then is the whole methylation process or ridding myself of toxins is not like other people. One might say I have dirty genes! it’s an over exaggeration - but useful when we think about the methylation process and autoimmunity and why antibodies choose to attack self as with Hashimoto’s. Perhaps the conversion process is intermittent depending on whether or what toxin my body is having trouble eliminating through the methylation process.

All I know is that NDT works for me and millions of other people and has been used successfully for over 100 years. A doctor once wrote that NDT works because the person imagines that it works and that it’s really not any more than a sugar pill. He was instrumental here in the United States and almost successful in getting Armour Thyroid in particular, banned. And of course the pharmaceutical companies want it banned and of course the pharmaceutical companies want it banned. I wrote to the FDA personally and referenced that article and said “if it is my imagination then I have a very powerful one please keep making it available.” Mary Shomon lead the charge and letter writing campaign to FDA. That was a few years ago. It’s really quite insulting.

those are my thoughts and guesses.

[DebTex in reply to dtate2016]

So, NDT usually works well for people with Hashimotos? I asked my Dr. about Armour and Nature Throid he said that he did prescribe Armour occasionally and that NatureThroid had gone out of business, I don’t know if that’s true or not, he might would prescribe Armour to me but if he doesn’t do any better job on figuring out how much that I need to be on than what he’s doing now on what I’m taking I’m not sure of the point of it.

[dtate2016 in reply to DebTex]

I haven’t heard that nature throid went out of business. My prescription was just refilled about two weeks ago. For me if I couldn’t get nature throid I would go back to Armour in a minute. It Was reformulated and some people said it didn’t work as well for them but it still works for me. It might be worth checking around - my experience is, until you get a doctor that is as interested in you feeling better as you are, you get stuck in a going no where rut.

I found this doctor by asking friends and family in Tulsa. He has a huge following people come from many states all around to see him. Also big on going gluten free dairy free, soy free - and what he calls resetting the gut. Beware of finding a functional doctor on the Internet - Many times they charge outlandish prices because some people will pay. Another name or another type of doctor that you might look into is what’s known as osteopathic doctors, here in the US. The office call / price for my functional Doctor - also an osteopath, is around $85.00. Insurance pays when I file a claim because again, they don’t like him.

Walgreens drugstore told me that Armour thyroid was discontinued many years ago. It was a lie. Still have the letter where they wrote me and told me go to the doctor and get a different kind of prescription. I called Forest laboratories and asked! Found out what had really happened is that Forest had been forced to reformulate Armour ( so on one level I guess Armour had been discontinued - the previous formula!) I called Walgreens and gave them the number to Forrest laboratories. What a ruse! My local small town pharmacy never ran out of Armour - Walgreens seemed to have trouble, but this little mom-and-pop pharmacy in my town never had a supply problem. Amazing! I’m telling you, we have to be our own advocates with Hashimoto’s it’s a total uphill battle but we can prevail. Once you find what works for you - you’re going to feel so much better. Hashimotos in the big scheme of things, while it is an epidemic world wide, it is not the worst disease one can have - dangerous potentially deadly left untreated, so very livable with the right hormones, vitamins, minerals, enzymes, healthy diet. Some people like Isabella Wentz say they have cured themselves with diet. I haven’t been that successful nor have I been that disciplined.

[DebTex in reply to dtate2016]

$85 isn’t outlandish, especially if your insurance pays on it, I might ask you sometime who you see, if I can’t find anyone around here that has a clue. I live out in the country about 30 miles from a big city and I was talking to my local pharmacist one day recently about Armour and he said that they have a hard time getting it, and that they had a lot of customers on it, I would hate to get on it and them not be able to get it, I use to be on levothroid for many years and did Ok on it, and then they stopped making it and was put on Synthroid and have had problems ever since even though they were both levothyroxine.

[LAHs in reply to dtate2016]

Good for you phoning the manufacturer, Forest (of Armor)! I did exactly that once just to find out where I could get their Armor from. They were very helpful, they gave me suppliers all over the US. Very strange about the problem with Walgreens, I wonder what they were up to?

[dtate2016 in reply to LAHs]

The price of Armour Thyroid at that time even if I paid cash was the less then 100 aspirin tablets. It was profit, no doubt my mind. They had just finished a massive building and investment in placing a store on every corner all across the United States they had an ROI focus. They wanted customers buying drugs that had larger profit margins. Since then lots of things have changed in the healthcare world including the affordable healthcare plan - and all of a sudden NDT costs 10 times more - it’s profitable now!

[LAHs in reply to dtate2016]

That breaks my heart! You know I never put those to things together but you are right, Armour was cheap ($30), then we had the Affordable Care Act and then it was $150! I hope that is just coincidence, I want to believe that we will one day have health care for all and not just for the rich.

[DebTex in reply to LAHs]

I am fortunate that my Husbands insurance pays on prescriptions, so we pay a reduced amount for most Rx’s, of course we pay a lot for the insurance, anyway where I am my T3 cytomel is twice as much as the T4 Synthroid, of course the generics are a lot cheaper but I always heard not to get generic thyroid meds, I don’t know what people on here think about generics. What makes Synthroid cheaper than Cytomel, supply and demand, greed of the drug companies?

[DebTex in reply to dtate2016]

Do you know, is there a usual starting dose for Armour, do they go by your last blood test, and how do you stop your current thyroid meds, do you do it slowly before beginning Armour?

[dtate2016 in reply to DebTex]

I have heard here of a starting dose, but for me, they just started me on 3 grains (roughly 190 mg.) of Armour. (Straight from Synthroid - which made me feel worse than no treatment!) No transfer problems. However, within just a few months, that dose was reduced to 2 grains or 130 mg (Like 6 months), and after I started selenium, it was reduced to 1 grain or roughly 65 mg of Armour. It's been that way ever since. From time to time the dosage has been adjusted up or down slightly for a little while, that is the nature of Hashimotos, in my experience. After things level off, I go once a year - or if something comes up and I begin to feel bad, (which almost never occurs), I make an appointment and go sooner. (pardon the pun!). Hashimoto's is an autoimmune condition. My experience is that when my immune system is fighting something else (I don't get sick often), then it can affect how much NDT is needed - more or less.

No the $85.00 is not bad. I was comparing it to some of the online "Functional Drs". They can start out at $300.00 to $500.00.

I'm sure you will find someone closer. Word of mouth is the best way to find this kind of Dr. I have close relatives in Tulsa. Never need too much of an excuse to go visiting. But here in NE (rural) Missouri? It may well be the next millennium, or the advent of genetically customized medicine (whichever comes first!) before Hashimoto's is treated effectively.

[DebTex in reply to dtate2016]

Thanks, it sounds like you are doing pretty good on what you are taking, that is great. I know someone that started taking 30 mg of Armour as a starting dose, is that low? Someone on here gave me the names of some Dr’s in my area that have some good reviews that I am going to research.There are some very helpful people on here.

[dtate2016 in reply to DebTex]

Yes, 30 mg Armour is a low dose. My doctor said he had people on 100 and 200 mg that were doing just fine.

[DebTex in reply to dtate2016]

Thanks, I’m seriously thinking about talking to my Dr. about Armour or Nature Throid, I don’t want him putting me on a real low dose and leaving me there, like he’s done with what I’m taking now.

[LAHs in reply to DebTex]

Stop thinking about "what HE will put me on". A starting dose of 1 grain is fine, then titrate up by 1/4 grain about every two weeks until you begin to feel well. But do it in your own time, there is no point in staying ill until your next appointment and then have your doc sweat over blood tests that he doesn't really understand.

Get your own blood tests vis True Health Labs, they are on the Internet and centered in Georgia (on the East Coast - of the US). Request a total thyroid panel, it will cost a little less than $300 and, while that sounds a bit expensive to start with you will make up for it in gasoline traveling to and from a doc who doesn't know what he is doing. Post your results on this forum for advice.

[DebTex in reply to LAHs]

You are probably right, I don’t even know what 1 grain is, I only know of milligrams where I live, and how do go up on it when you Dr. only prescribes a small amount to start out with? I’m not familiar with trying to find thyroid meds on my own like the people on here. Thanks for your reply.

[DebTex in reply to DebTex]

I googled it, 2 grain is 60 mg’s of NDT? I don’t think I’m knowledgeable enough to do everything that you said unfortunately, and my GP is the only one I have at the moment.

[DebTex in reply to DebTex]

I meant 1 grain not 2

[LAHs in reply to DebTex]

Yes, 1 grain of Armor NDT is about 60 mcg of Levo. btw, thats micrograms, not milligrams. For a 1/4 gram increase you will have to cut up a whole pill (into 4). that is a big nuisance but it's a small price to pay to get on the right dose.

I am sorry I sounded too pushy, I forgot how frustrating it is when you first start out with all this and it took me back to when I had a stupid doc who was dictating my dose and I was falling ill and more ill every week. I should not have been so blunt. What many of us have to do is take whatever our doc offers and then trim the dose to what makes us feel well. Many times we have to switch docs if the level of frustration gets too high. That is something that is unthinkable when you first start out but it took me about 5 docs before I got a good one (my present one). Keep studying the subject, ask questions here and you will become normal to very well again although it might take quite a while, it took me 2 years.

[DebTex in reply to LAHs]

Thank you for that, I’m not new to taking thyroid meds, I’ve been taking them for 40 years, I’m new to what I’m taking being so far off the mark, leaving me feeling this way and for my Dr. being clueless and the one I had before him was even worse, I will be trying to find another one, hopefully better but I need a big change in the time being.

[DebTex in reply to dtate2016]

I googled how far away Tulsa is from me, it’s a little less than 300 miles, I’d hate to go all that way to find a good Dr. it would probably be worth it though. Do you have to go very often? You may win the prize of farthest drive.

[LAHs in reply to DebTex]

I travel 200 miles to my good Endo, that's a 400 mile round trip and takes me about 7 hours. I get a good book on CD to make it interesting. After a while you only have to go once a year. Go find a good restaurant at the far end for lunch (after your blood test if that's on the agenda) or a good steak house on the way back for dinner just to reward yourself. It isn't necessarily a terrible prospect to travel to the ends of the earth to feel wonderful or even just normal. You are not alone in doing this, many of us have to.

[guysgrams]

Sometimes here in the U.S. as in other Countries you have to bite the bullet and get private testing if your State allows. I've had to do that for years now since every doc I've had will not do what I ask.

[DebTex in reply to guysgrams]

Thank you, I do know of a private lab where I can get some testing done, if my Dr. had done all the ones I had asked him to my insurance would have paid for it.

[guysgrams in reply to DebTex]

Oh I hear ya but some docs just can't seem to work with us.

[PPower]

DebTex, can you get another doctor? You are undermedicated and your doctor doesn't have a clue. Can I assume you are in Texas? There's a great FB group with lots of doctor recommendations if you're interested.

[DebTex in reply to PPower]

Yes I’m in Texas, and yes I probably need another Dr. I don’t think he knows what he is doing, I would be interested in the Dr. recommendations, thank you.

[DebTex]

Thanks, yes I read in a book last night and it sounded like I had hashimotos, I don’t know why I didn’t have it checked before now, I have been reading really good advice on here so I had it checked out, I am only on 56mcg T4 and 10 mcg T3, 5 in morning and afternoon, I know by the way I feel that I’m not where I need to be but I don’t think I can tolerate anymore T3, nervousness and heart racing at times, I did have my labs done early in the morning, fasting, without taking thyroid meds before blood work, I had read that on here, I had never done it that way before, only fasting, the Dr. wanted me to do it while I was in his office in the middle of the afternoon, without fasting and of course I had taken thyroid meds that morning, I told him that I wanted to come back and do it early the following morning while fasting and he told me you only had to fast if cholesterol is being checked, he told me that twice while I was there, of course I didn’t listen to him, he was all bent out of shape about it and snatched the lab work sheet out of my hands, the so and so! Thanks for your help!

[vocalEK in reply to DebTex]

Don't give up on T3. It's important to get the right balance of T4 to T3 for your body. Right now, you are terribly undermedicated. Your FT4 number barely makes it into the bottom of the range, and it needs to be at least above the halfway point between top and bottom of range for you to feel better. As for T3, it needs to be in the upper quartile of the range. So for you, FT4 needs to be above 1.25 ng/dL and FT3 needs to be above---ooops, I don't know because there is no result for FREE T3.

[DebTex in reply to vocalEK]

Thanks, my lovely Dr. 🙄has some T4 to T3 ratio formula that he was going by, I guess that’s how I ended up so under medicated, never mind all my low thyroid symptoms and complaints that I’ve told him about and they have definitely been worse these last 2 months on the dosage that I am on. Thanks for your help.

[vocalEK in reply to DebTex]

Keep in mind that it is the Free numbers that are involved in getting into the right part of the range. So the ratio of the absolute amount of total T4 to total T3 doesn't give the correct information. He needs to look at where Free T4 and Free T3 are located within their ranges.

[DebTex in reply to vocalEK]

Thank you, I asked my GP to check my Free T3 on my last 2 blood tests and he didn’t do it, he’s obviously going to do what he wants without any regard to what I want or how I feel. I’ve just been going to him since July of last year, my other GP moved away, but he was even worse, I haven’t really ever had good luck finding someone that seemed knowledgeable about the thyroid.

[vocalEK in reply to DebTex]

I understand that in the UK, a GP might not be able to order an FT3 test. It takes an endo. In the U.S., no problem. The good news, if you are in the UK, is that Thyroid UK has a list of doctors recommended by thyroid patients. thyroiduk.org/tuk/About_Us/...

[vocalEK in reply to DebTex]

If you are in the U.S., I suggest you access this abstract, print it out, mail it to him. Let him know you'd like to discuss it at your next appointment.

"Because of their higher diagnostic performance, free T4 (FT4) and free T3 (FT3) measurements have superseded total (free + bound) hormone determination."

ncbi.nlm.nih.gov/pubmed/129...

[DebTex in reply to vocalEK]

Thank you, I’m in the U.S. That’s a good idea mailing that to my GP, if I can get up enough nerve to do it, my last office visit I handed handed him a note with the things I’d like checked, Free T3, TPO & TG antibodies, B12, Bit D, Ferritin & Folate, he looked at it a minute, handed it back to means didn’t say a word and I could tell he was mad, he was very brusque the rest of the appointment. There are a couple of Endo’s out here in the country where I live, I am about 30 to 45 minutes outside of civilization😅anyway I’m going to research them and surely one of them will be better than my present one, I haven’t been to an Endo in a long time, and they all specialize in different areas. Thank you so much for your and everyone else’s help and kindness on here, and you guys are so knowledgeable too, I’m in a situation now that I have to learn more about the thyroid so that I can be an educated advocate for myself, not continue on barely existing, and I would love to learn enough about the thyroid to help others like the people on this forum.

[LAHs]

I just noticed something which got me wondering. It is often said here and by my doctor that 1 grain of NDT is roughly equivalent of 60mcg Levo. Now, I just happened to glance at my container and it says 1 grain (60mg). MG! Nah. So I just called Forest Pharmaceuticals for an explanation:

1 grain of Armor contains 38mcg of Levothyroxine(T4) and 9mcg liothyronine (T3). That has been mentioned lots of times before on this site. Notice that it has been altered to a 4:1 ratio instead of it's usual pig ratio of 3:1. So why the 60mg? Well the guy at Forest said that the rest of it it fillers (understandable I suppose) and if you put a 1 grain tablet on a scale it would weigh 60mg. So, that is not the 60 mcg equivalence to Levo which is also true, that's just a coincidence.

Interesting.